Sibling solidarity

Finally, the last hold out of the siblings has come to the realization that there is a serious problem.  It is amazing how much clearer you see things when you are face to face than when you talk on the phone or hear through others.  After a face to face visit last weekend, my baby brother realizes there is a serious problem and is on board to do something about it.

As I've said before, I would be happy to be wrong about this.  But since we all agree, and the psychiatrist agrees there is a problem, at least we all need to get on board and do something about it.  I am so thankful that all three of us are in agreement.  I see so often, working in assisted living, that children frequently prefer to stay in ignorance rather than face facts.  And of course there are the children that are totally self-centered and even if they recognized a problem, would not help with it.  It makes you wonder as a parent, is there something I can do to ensure my children will stay together and work together?  I guess only time will tell.

In my life in general and especially in this situation, I am trying to focus on being thankful for the positives and not so much dwell on the negative.  I am certainly thankful for the support and solidarity of my brothers.  I know from experience this will be a long process and require a lot from all of us over the years.  I'm just thankful we will be able to share the burden.

Snoezelen in practice

I experienced first hand this week the concept behind the Snoezelen therapy concept.  According to Wikepedia:

"Snoezelen (pronounced /ˈsnuzələ(n)/) or controlled multisensory environment (MSE) is a therapy for people with autism ordevelopmental disabilities. It consists of placing the person in a soothing and stimulating environment, the "Snoezelen room". These rooms are specially designed to deliver stimuli to various senses, using lighting effects, color, sounds, music, scents, etc. The combination of different materials on a wall may be explored using tactile senses, and the floor may be adjusted to stimulate the sense of balance.

Originally developed in the Netherlands in the 1970s, Snoezelen rooms have been established in institutions all over the world and are especially common in Germany, where more than 1200 exist.

The term "snoezelen" is a neologism formed from the Dutch "snuffelen" (to seek out, to explore) and "doezelen" (to doze, to snooze). "Snoezelen" is a registered trademark of the English company Rompa.^[1]

Ideally, Snoezelen therapy is a non-directive therapy^[clarify] and can be staged to provide a multi-sensory experience or single sensory focus, simply by adapting the lighting, atmosphere, sounds, and textures to the specific needs of the client at the time of use. There is no formal focus on therapeutic outcome - the focus is to assist users to gain the maximum pleasure from the activity in which they and the enabler are involved. An advantage of Snoezelen therapy is that it does not rely on verbal communication and may be beneficial for people with profound autism, as it may provide stimulation for those who would otherwise be almost impossible to reach.

Snoezelen therapy is used for people with autism and other developmental disabilities, dementia, brain injury and even toddlers. However, research on the benefits of treatment is scarce, based on variable clinical study designs.^[2][3]"

I got a new body wash with the Sweet Pea/ violet scent.  I was amazed that as I started to wash and smelled the scent, I was reminded of a doll I had as a kid.  There were these tiny little plastic dolls that had scent in them and I remembered distinctly the doll, where we were living when I had the doll, what my bedroom looked like, how it felt to hold the doll.  It was pretty amazing because I probably could not have called up that memory without the scent.  

There is so much we don't know about the brain and how various forms of dementia really affect it.  Just yesterday my boss, who has tons of experience in long term care and caring for individuals with dementia, commented about how her own mother at times seems so clear.  When I talk with staff I try to remind them that we don't really know how much someone is processing of what we say and do.  They may not be able to respond in a way that we can understand, but it doesn't mean they don't understand somewhere inside.  How exciting that so many new ideas of therapy and creating therapeutic environments are coming into use.  I may not get to use them to help my mother, but I hope I can use them for the benefits of others.

Examples of True Love

I have been amazed this week at the examples of what love really means.  I've had the opportunity to talk with several husbands that are caring for their wives with dementia.  I guess it is a cultural thing, but it doesn't seem unusual for the wife to be caring for the husband.  After all, women are natural care-givers.  But I have been amazed at what these husbands are doing and have done for their wives.

My first experience of what can happen when someone is diagnosed with a chronic, progressive illness happened at my first professional job in the nursing home.  There was a lady there who was in her 50's and had been diagnosed with MS.  She used an electric wheel chair and got around the nursing home, although she needed assistance with everything.  Her mind was still very much intact.  Her husband had left her when her illness began to progress and she needed more help.  The same thing happened with my cousin who has MS.  Her husband left her as she became weaker.  So I guess I had come to expect that although women stay around to care for their spouses, men do not.  I love to be proven wrong.  I met a really wonderful gentleman who is caring for his wife who has early onset dementia.  Not only is he not contemplating giving up, but he sought out the Caregiver Support Group because he wants to do the best job he can.

I don't know why I am surprised, I know my own father would not skip out.  But then like most daddy's girls, I think my father is one in a million.  It seems in our culture men are judged by how strong they are.  So here is a toast to the men who are strong enough to stick with it, to take up roles they never had before and work outside the home and take care of the house, who pray for and practice patience with their spouse's illness, who should be recognized as heroes.  You are heroes in my book and I know in your family's eyes as well.

The Frustration of Being a Daughter

I got a call this week from another daughter.  She was calling to find out about the Caregiver Support Group for her dad.  She lives out of town and wants to help her dad.  If only he would let her.  In this particular case, the wife has early onset dementia.  I actually remembered talking with him several years ago about assisted living when the wife was first having problems.  They were early in the process and my boss had recommended they get a thorough medical exam.  It's odd how initially Alzheimer's was linked with relatively young people having memory loss since it was thought that as people age, every one would develop memory loss.  Now when someone, even as experienced as my boss, sees someone young with symptoms, they assume it must be something else.

What a disservice our culture does to male caregivers.  The expectation that they be strong, handle everything by themselves it so potentially damaging to them.  Even as hard as it was for the 2 wives in the support group to come to their first meeting, they knew they needed help and had the support of their friends and family to come get help.  Now here is a man who needs the support, but trying hard to be strong and not get the support and help that would be so beneficial.  And for us daughters, how heart wrenching to want to help, to try to help and to be so powerless to do anything but get information and pass along.

I can't change society or the expectations built up over hundreds and thousands of years.  But what a good insight to bring to my attention.  How do I make it easier for men to accept help and to come to the meetings?  And maybe in the process I discover something to help my own dad.  Thank you Pam for your call- a call to action for me.

Open to Surprises

No matter how much experience I have and how much I learn, I am always amazed at what new things you can learn if only you are open to doing so.  During last week's phone conversation with Mom, I learned an interesting tidbit about my grandmother that I had never heard before.  Grandma and Grandpa had to move to be closer to my parents after Grandpa had his stroke.  Grandma wasn't able to handle everything on her own and my parents lived 8 hours away, too far to really be of help.  It was probably 5 years later that we realized Grandma had what was diagnosed then as vascular dementia.  Looking back now with hindsight, I should have seen the signs that at the time of Grandpa's stroke there were warning signs.  When she referred to stop lights as "electric stop and go's", my husband and I thought it was funny.  It was a actually a sign of things to come.

Grandpa went to a nursing home near Mom and Dad, but for a short while, Grandma lived in the house with them and my two brothers who were still at home going to college.  I was already married and out of the house, half the continent away.  It was pretty rough on my brothers.  My grandmother was pretty demanding and I understand got pretty ugly with them at times.  That was very unusual for a woman who attempted at all times to present the image of decorum in her younger days.

In my conversation with my own mother, she talked about how at one point my grandmother told her that she and my dad were at risk of not paying enough attention to my brothers.  I would have to agree.  My parents had their own business and it pretty much consumed their lives during both my and my brothers teenage years, pretty impressionable times.  It was an insight that surprised me and I was surprised my mother shared it with me actually.  My grandmother saw what was going on and tried to help my brothers back when she was still herself and untouched by the dementia.

I was hoping to show my brothers how the behavior that had been so difficult for them was symptoms of the dementia and that she really did care about them when she was still herself.  Imagine my surprise when one of my brothers responded still quite angry about what had happened.  It reminded me of my advice to my staff with our residents.  We never know what has happened in the past with our residents and their families and we can't make judgments.  We see the person as they are at the moment.  We don't have any of that past information.  I hope in time my brother will be able to heal and  see the behavior was the disease, not the person.  In the meantime, I hope to be able to hang on to these new revelations about people I thought I knew.  There is always something to learn if you are open to it.

The Battle of their Lives

I was at the grocery store yesterday and noticed an elderly man doing the grocery shopping.  Not so strange until I caught up with him several aisles later and saw that he had his wife with him.  She had a walker and was sitting in it.  He would push his cart and shop, then go back and get her and she would walk with him to the next section.  I saw what my dad will be in a few years.  Since my husband retired from the army and we live near an army post, I use the grocery store on post.  Everyone in it is either retired military or active duty.

This man was about my dad's age, I'm guessing, 80 something.  Possibly old enough to have been in World War II, certainly the right age to have been in the Korean War. He was slight built like my dad and about 5 foot 8.  Like my dad, a proud man who wanted to be independent.  Taking care of his wife at the same time as doing the chores that go along with life.  I think about men like this.  Men who have served their country, men who have risked their lives.  And at this stage of life, they want to continue to be the strong, independent men they have been all their lives and do it all.  Do they know this is the hardest battle they will fight?  Instead of being a partner, they are now the caregiver for their wife.  They have their own health problems and if not too bad, certainly are not in the state of health they once were.  Yet like my dad, I'm sure this man does not want his children "helping" either.  I'm a helper by nature.  Yet I'm having the greatest challenge in finding the balance.  How do I help, yet not take over, not take away the independence and decisions even when I think I know best.

I thank God for opportunities like yesterday to see the picture at a further perspective, not so close as it is with your own family.  I hope it will help me to make the best decisions on what I should do and what I should stay out of.

Lessons from Unusual Places

One of the things I love about my job is learning from elders.  I love to learn about history from those who lived it.  This week I learned a valuable lesson about the roles of child and parent.  I come from a long line of people who think our way is the only "right" way.  So you can imagine what happens when something comes up and we have different opinions on what should be done.  I have taken it upon myself to be the coordinator of what is going on with our parents.  I send out e-mails with my observations, my interpretation of what is going on and of course what I think needs to be done.  I don't usually appreciate it at the time, but one of my brothers is the voice of "take a step back".  Sometimes I think he errs on the side of not taking enough action.  But this week his view point was confirmed by one of my residents.  She is going to be moving to another facility because it is cheaper.  She is not happy about it.  She told me the other day, "when your children are young, you make the decisions for them.  When you get old, your children make decisions for you."  She went on to tell me "when your children are young they step on your feet, when they get older they step on your heart."  What a powerful reminder that not only are there more than one "right" way to do most things, but that sometimes the relationship is more important than the task at hand.

I of all people should know better.  I am the one always telling the staff that when our residents get upset, we need to remember how much they have lost, their homes, their health, their ability to make so many decisions.  I am so thankful for my brother's point of view, my resident confirming it, and the ability for me to learn from this situation.  When the time comes, I will step in and make decisions because I have Power of Attorney.  But until then, I need to step back and support my father just like I support the families of my residents.